Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

I have been diagnosed with de novo perihilar cholangiocarcinoma . I am at stage 1 the tumor is at the edge of the liver. non resectable. I have been listed for a transplant. I have been focused on the transplant forum. I have checked this forum and found this discussion. I got in wrong I am still learning this communication forum. I have gone thru the chemoradiation and brachey treatment as I wrote earlier. I have read these post over and over several times. the more I read the more questions I have . I have been on xeloda treatment since june of 17. I have hade side affects. I am not sure if I fit the category. there appears to be multiple stages which have not been discussed with me yet. I thought the journey was the transplant. there appears to be more. I have not had any one to talk to out side the DR office until last week when I found this while looking for answers. this seems to be longer issue than I expected. i have realized i don't have much to add but more to learn.

I am not sure what happened but it posted to soon
I have done everything chemo radiation treatment with chemo infusion 5FU. Then did brachey treatment in the middle of the chemotherapy radiation. I am listed for a transplant But not activated . I am on Xeloda and have side effects. I am meeting with surgeons in. May for staging. Not sure how it works but they will check I found the cancer has spread. Metastasis they call it.
At that point I will find out if I get a chance at transplant. Or I have to go another route. I can offer what help I can give. Prayers and friendship is always there for you.

Hello Kris
I was diagnosed with cholangiocarsanoma in Feb of 17. I am being treated at CTRC I. San Antonio tx. They have sent me to Mayo clinic in Rochester Minnesota

Thank you Kanaaz - to be clear, the metastasis is not IN the brain, but ON a bone. Some spreading into the brain can be seen on the MRI, but they are not calling it brain cancer. I've read the article you referenced above. Very technical but I did understand some of it. Prognosis does not sound too good, but then again that can be said for cholangiocarcinoma in general. My oncologist suggested we are probably seeing this rare metastasis because I am living longer than initially expected. At my diagnosis almost 3 years ago, they said I had maybe 2 years, so I'm beating the odds! Thanks again for the information. If you find anything else, please share. ~Kris

Hi @krishh,

I'm so sorry to learn about his development. You're correct in noting that this kind of brain metastasis is extremely rare with cholangiocarcinoma. In fact, I found an interesting article about this rare occurrence which you might wish to read: https://www.hindawi.com/journals/crigm/2017/7156838/

I may be wrong, but after reading through your previous posts, I truly feel your strength lies in the fact that it's not about fight, or chances, or resilience; it's about acceptance. I cannot help, but have deep admiration for your attitude, @krishh, so please continue talking and sharing updates with this community – we're here, listening.

I just learned Thursday that my cancer has matestacized to my head. I have a tumor on the bone in the left, frontal lobe. This is highly unusual with this type of cancer I am told. A little scary, for sure. I feel grateful I have no symptoms yet - no headaches or vision changes or mood swings. No new treatment will happen, as I am high risk for surgery and am not crazy about the odds of radiation at this point either. So will continue with chemotherapy at this time, and repeat the MRI and CT scans at the end of April to determine any progression of disease. God bless all ~

Hi Kris - This is an addendum to my previous post. Please send me a private message.

Hello. Great to hear. I would like to ask you questions. Can you call me or I can call you?

Hi -I had my surgery at Mayo in Rochester, MN in May of 2015. I only live about 75 miles from Rochester. My diagnoses is stage 4 also, and I am currently doing quite well. Just saw my oncologist yesterday. Will have scans again in March to see if this chemo is still working. Feel free to reach out if you or your Mom have any questions and I will do my best to answer! Good luck ~

Hi Kris. My mom was just diagnosed with CC stage 4. Where did you have your surgery?